Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Thursday, December 20, 2012

Death By Bedsores

Late last month I read an article by Art Caplan on Medscape: "Patients Have the Right to Choose Death From Bedsores".Caplan's article has been discussed in some detail within bioethics. Caplan's article is about an elderly man in his 80s who lived in a rural area, had one daughter, and lived an independent life until he had a series of strokes. At some point during his hospitalization this man was told he could not return to his home and formerly independent life. He was going to be admitted to a long term care facility. Not surprisingly the man in question balked at this idea. Controversy erupted when he refused to be turned. He knew that if he were not turned severe wounds would develop, grow in size, and eventially become infected. Death was inevitable. According to Caplan the man died in the
hospital, with huge ulcers. Basically, his body fell apart,
the nursing staff was in an uproar, doctors fighting about whether
or not it was right to let this happen. It was quite
divisive for the staff morale, and indeed they were investigated about
how a person in their hospital could die from infected skin
ulcers.

Caplan concluded the elderly manhad the right to refuse to be touched and moved even if it would result in death. Caplan thought the refusal to be turned was akin to a patient that refuses a feeding tube or dialysis. This is an interesting point no doubt. However, Caplan really goes off the rails at the end of his essay when he wrote that this man's decision started to affect nursing and staff morale and began to
become a problem in the delivery of
care for others, then I believe that is a factor that has to
be considered when deciding whether to honor what he says. The
nurses cannot work if the unit becomes a smelly, untenable
mess, and although this man had his rights, other people have their
rights too. If I thought the care of others was being
compromised by these morale issues and staff problems, I might override
a patient's wishes. I might not honor his request in the
name of other people's rights. In my opinion, there may be limits
to what you can request when it affects the care that others
can receive. That is a tradeoff that has to be weighed at all
times.
As tough as this case was, it provides lessons to take home.
Autonomy and patient rights may have some limits when they begin
to affect others and the care that others can get. It may be
important to think about this kind of dilemma in advance, and
be ready to say as soon as a request comes that this is the
patient's right, but it is not something we can accept at this
facility.

Caplan's conclusion left me shaking my head in disbelief. Caplan should know better than to pen such a sloppy anaysis. In my estimation Caplan's scholrship is undermined by his penchant for shooting from the hip and pumping out opinions that clearly need to be considered much more carefully. When I read Caplan's conclusion I immediately thought of Susan Schweik's book the Ugly Laws that masterfully details how people with a disability were prevented from begging because their mere presence in public was objectionable. Historically, people with disabling conditions were overrepresented in the ranks of beggars. This undoubtedly distressed those without a disability in the past and present. One word comes to mind when I think about the end of Caplan's essay: outmoded. I find it distressing Caplan is willing to overide a patient's wishes if this person affected the moral of the staff or care of others. This is no mere "tradeoff|" as Caplan asserts. I can readily imagine the implications for disenfranchised populations, people with a disability included. These thoughts bring forth words we now deem antiquated like feebleminded, lame, epileptic, retarded, idiot, insane and many others. And what about the present? Will the presence of a person with Alzheimer's disease affect the moral of the staff? Will such a person who yells out cause distress to other patients? Will this person be chemically restrained to improve moral? And what about a person such as myself who is paralyzed? Could my presence alone cause staff members to be depressed? Could other patients fear my condition is contagious? Yes, I am using a slipperly slope argument here--something I do not ordinarily utilize.

Caplan's article was likely written to prompt debate. Afterall, he is a larger than life character in bioethics and recently took up a position in the Division of Medical Ethics at the NYU Langone Medical Center in New York. When I heard about this I thought one thing: Caplan wants to live in the media capital of the country. This is not such a bad thing--bioethics as afield is devoted to critically important issues in healthcare. Caplan has positioned himself to be the go to guy when any ethically questionable issue arises. I simply wish he would think before he speaks.

7 comments:

Hola, Bill: A couple of observations from another ethicist here to add to the discussion you've begun...

1. Death from massively infected (and deliberately untreated) decubitus ulcers can be a very distressing process to witness for all involved (including the patient and his family and friends) - for many of the reasons that Caplan listed but chiefly the physical pain & discomfort of the patient and the often overwhelming odors from the infected sites. That said, as you correctly pointed out, the primary focus should remain on this man and his wishes & dignity. So why not facilitate a transfer home or to an inpatient hospice facility that is specifically equipped to deal with his suffering? Caplan's piece need not have been sidetracked by his hypothetical 'needs of the individual versus the group' analysis. There appear to have been unexplored options in this particular case (although in fairness, perhaps they had been explored but unavailable.)

2. Sadly, there are occasionally cases that do involve the kind of painful moral math that Caplan refers to, despite our best attempts to solve them to everyone's satisfaction. Rare but they do happen. I was once involved with a (very) terminal dialysis patient whose family insisted on dialysis even though the patient couldn't tolerate it (screaming, thrashing, pulling out catheter) and would upset the other dialysis patients in the clinic. Also, there were simply not enough clinicians available to hold him down and still provide ongoing dialysis to other patients. They ultimately refused to keep him as a patient for these reasons, although this was a blessing for theis patient (IMO), who was actively dying and in a lot of pain and discomfort when he wasn't heavily medicated. These are relatively rare cases in my experience but always very sad for all involved.

Bill wrote: "When I read Caplan's conclusion I immediately thought of Susan Schweik's book the Ugly Laws that masterfully details how people with a disability were prevented from begging because their mere presence in public was objectionable."

I apologize in advance if I misunderstood what you meant here. I have not found it to be the case that the mere presence of dying* people is distressing or "objectionable" to hospital personnel. They are of course quite used to death since they see it on a very regular basis. I think the primary distress in Caplan's case came stemmed from the particular symptoms that they were unable to successfully palliate. It is never easy to see a dying person just lying in a bed in unremitting pain. We remain in agreement about Caplan's secondary considerations in this case.

Again, a commitment to professionalism is necessary for clinicians to work through this distress to concentrate on the needs of their individual patients. Indeed, not only necessary; we should expect this of them.

* Clinician comfort around people with disabilities can be an entirely different matter, as you detailed in your Hastings piece.

Ronn, I agree death caused by massively infected sores is horrible. And yes the smell can be horrible. It is in short a very bad way to die. Unfortunately Caplan missed an opportunity to discuss critically important issues an independent elderly man might confront. Foremost among them how can such an individual get the most out of life? What sort of options were available to the individual in question and by extension other eldery people? Why were the choices he had limited to hospice care or a nirsing home? Under what grounds was he refused entry to a lonf term care facility? Your phrase "moral math" is a good one. It makes me think about the days after my wound was treated and I was medically stable. My options were limited and I was repeatedly told there was nothing else that could be done. This is akin to "moral math" and it is wrong. The options the elderly man and I had were wrong--an indication of a significant social problem. Hence the man's death was tragic and proof we as a culture are failing to value vulnerable populations.

For me one of the most telling sentences in Mr. Caplan's speech is one that doesn't appear in the transcript (that, in itself, seems to underline it).

In the paragraph that begins "What are the lessons ..." the third sentence of Mr. Caplan's speech has been omitted. It was, "These are other things that people may figure out that they may request."

I wonder if Mr. Caplan means 'watch out, or your patients may figure out how to die without your permission.'

The fundamental issue here is the hospital's refusal to discharge the patient to his own home, where he would prefer to live - and die - and instead insist that he'll never be allowed to live independently again. His refusal to be turned seems like the only thing he could do to shorten the time in which he would be incarcerated.

Is this really how we want to be treated when our lives are of no further use to us?

Second Summit, I did not notice the missing sentence. It could be interpreted many different ways. I am certain of one thing though--knowledge is important when dealing with our for profit health care system.In my experience discharge planning is done exceptionally badly. Bodies in bodies out. This man wanted to live in his own home. Was this avenue explored or was such an idea instantly dismissed? What social services if any could have been tapped into to assist this man? In posing these questions I realize the level of trust and faith in our health care system is nil. This is a social tragedy.

Bill, Second Summit: It is highly unlikely that the hospital refused to discharge this patient home against his wishes. To my knowledge, they would have no legal authority to do this if the patient is competent or has a medical POA or surrogate. In those instances, a patient is discharged against medical advice (DAMA). It is possible that the sheer amount of pain that this gentleman was in made such a discharge ill-advised but I don't think the hospital had any leverage to keep him there against his will.

Bill: Couldn't agree more re discharge planning. Sadly, even good discharge planners (and I work with many very good ones) are unfairly viewed as the 'bad guys' in hospitals primarily because of what didn't happen prior to a patient's discharge: clear, ongoing, supportive communication with medical staff. That, combined with onerous insurance practices and Medicare/Medicaid limitations, makes them the perpetual deliverers of bad news.

Maybe Caplan should have concentrated on why the old man wasn't encouraged and aided with Home Care and home nursing ( both free in Australia) to return home - We have Meals on Wheels as well and volunteers to do shopping - it is a sad state of affairs when the elderly and disabled have to be removed from their home because there is no system for them to stay in their home which actually is heaps cheaper than a nursing home.